Surgery - what to cut?

Emma today.  My little Miss Sunshine.

Today was a mixed bag.  We started out the morning with an appointment with a surgeon at a local Shriner's hospital for a second opinion for Emma.  The hospital was amazing.  The people were so very friendly, they were able to get us in for a second opinion without a long wait, and they even provided free parking in the downtown location!  I am sure that magic occurs there daily - heck it's definitely magic when a family knows their child will get the medical care necessary even if they do not have money or insurance to pay for that care.  In this day and age that is so very, very special.

The second opinion was for the adductor release surgery and hamstring lengthening her doctor recommended.  You can learn more about it in this post here.  The doctor we saw today was nice.  He commented that the hospital Emma typically goes to is world class and she looks like she has been getting very good care.  We were glad to hear that - even though we pretty much knew it it's still nice to hear it from another very respected doctor/institution.  We gave him a bit of background on Emma and he said sort of casually that Emma has quite severe CP.  Ouch!  I don't think that should ever be casually stated in passing.  To parents.  Especially parents that have only recently come to terms that Emma's CP is not mild and are wrapping their heads around Moderate CP.  Not severe.  But, alas, almost all the doctors Emma has seen seems to mention this quite casually so this is not a knock on this doctor at all.  Still....ouch.

The doctor looked at the Xrays we brought and agreed that Emma should get the adductor release surgery.  He didn't agree with the hamstring lengthening.  He had good reasons for it and I was glad to hear them.  His main reason for not recommending it is that since Emma isn't walking she most likely won't be helped by the procedure and it's likely the muscle will regrow pretty much the same as it already is and that since he can straighten her leg without much trouble it probably isn't needed just yet.  Truth be told I wasn't sold on that portion of the surgery which is one reason why we sought a second opinion.  He also told us about casting vs. not casting for the adductor release surgery.  Emma's main dr. doesn't cast.  This doctor does cast - he said it's a 2 week casting and mostly for pain management.  He didn't cast in the past but it was too painful for his patients so her believes casting is better for the child and avoids having them chock full of pain killers for a long period of time.  He did say, though, that not casting is a bit in vogue right now and so just as many doctors likely cast as do not cast.  I didn't know that so it was good to find out.  He also said cutting and surgery are very in vogue, too, with lots of doctors want to go straight to cutting.  Hmmm....I had a feeling about that.  If you go to a surgeon their likely gut reaction will be to cut.  That is a reason we are bringing a Physiatrist onto Emma's team.  Emma sees her in December and I'm looking forward to the appointment since she comes very highly recommended from other local parents.  Plus her name is Maura, which for some reason made me smile when I found that out ;-)

Where do we go from here?  Well, we have the physiatrist appointment in December.  We have a family consult for the surgery with Emma's original doctor in early January where we will discuss the one procedure vs. the two and casting vs. not casting along with expected time to recover, etc.  We have the surgery scheduled for late January and exactly what procedure(s) are done at that time will be dependent on what we decide at the family consult.

If anyone reading this has been there, done that and has any input on casting vs. not casting and adductor + hamstring vs. only adductor lengthening please leave a comment below.  I'd love to hear your experience.

To cut or not to cut?

"When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile."

- Author Unknown

Emma lives this quote.  I have never met a child that is happier or who can find fun in the mundane more than Emma.  The other day we were at the store and I saw a shirt that says "Smiles all the Time" and so I had to buy it for Emma.  The child radiates sunshine.  There is an amazing glow that just radiates from her - it's something that most people notice and never forget about her.  Even if they have only met Emma once I'm often reminded by them that the thing the most remember and associate with Emma is her amazing smile and glow.

Yesterday we visited Emma's orthopedic surgeon for our 6 month visit.  We thought most of our follow-up visits with her various specialists are now more "routine" and that things with Emma were going in the right direction like I discussed on this post.  We were wrong.  The x-ray they took showed her right hip is 50% out of the socket, likely a result from her recent growth spurt.  They looked at her hight changes from the last 6 months and couldn't believe how much she has grown.  I can.  I move her around all day, every day and my girl is LONG and, thank goodness, lean.  Supermodel material for sure!  But I'm not about to let that industry get their hands on my little angel.

Anyway, I digress.  A long conversation about the x-ray results, Emma's range of motion, etc. followed.  Her doctor wants to do an adductor release (and hamstring release surgery as long as she's under) on her within the next 3 months.  Time is important here because if we don't get it in time then Emma will face a hard, painful surgery on her hips.  There is still a chance Emma would need the painful bone surgery even after having the adductor release surgery but it would buy us a lot of time.    The adductor release surgery is a more minor (not that anything is minor when talking about your child having surgery) procedure with a much shorter recovery and much less pain.  He said on a scale of 1-10 with 10 being the hardest surgery the bone surgery is about a 7-8 and the adductor release surgery is a 0.1.  I likened it to ear tube surgery vs. cochlear implant surgery and he thought that was a great analogy.

Emma's doctor is really good and patient.  He took the time to talk to me as long as I needed - which is probably why he often is running very behind in his appointments because he takes his time with patients and families.  I appreciate that quality in a doctor.  I asked so many questions because, of course, this was the one visit with the orthopedic surgeon Chris didn't attend.  You know....because they are routine at this point and we didn't expect it to be an interesting visit.  Her dr. is 100% sure this is the correct surgery for Emma.  I asked about a second opinion and he said all the dr's at that hospital would give the same opinion as him and that we should be careful who we consult with and make sure it is a dr. very familiar with children with spastic quad CP.  Our hospital, DuPont Children's Hospital, has the largest practice for children with spastic quad CP in the country and so they have a large base of experience to draw from when making recommendations.  They do lots of research, they have leading doctors.  They are a top hospital and the quality of care Emma receives is amazing.  We really do love it there but whenever someone talks about putting my child under anesthesia and then cutting her muscles I think it is good to consider a second opinion.

When the doctor was drawing what he would do during the surgery Emma was very interested.  She thought it was all SOOOOOOO funny.  She couldn't stop laughing.  There isn't much that gets my girl sad besides bedtime and getting left behind when someone walks outside.

I took all the information from the doctor and shared it with Chris.  I also sent emails to some friends with children older than Emma to get their opinion on the surgery.  This is a very common surgery for children with CP so it's highly likely everyone we know with CP that is older than Emma either had the surgery or considered it at some point in time.  I also posted this to our CPMoms yahoo group for input.  And I came up with another question for the dr., emailed it to him and had a response from him in my mailbox this morning.  We're not sure what we'll decide, but it's likely we'll pursue the surgery because we sure would like to avoid the major surgery if we can.

Last night I took a long, hot shower.  There is just something about water cascading over my head that instantly relaxes me and that is exactly what I needed.

It's been a long week!  Last week at a "routine" eye exam the dr. told me that Emma has cortical vision impairment.  She is highly functioning with it but might need some accommodations on print size as she progresses in school and help with spacial perception as she continues to work on her power chair.  We'll deal with this as necessary just like we do everything else.

And Emma will be our guide to helping us remember - lest we forget - that we have a thousand reasons to smile.